Tuesday, September 16, 2008

Family and Friends and Your Autistic Kids

The worst part about receiving my daughter’s autism diagnosis wasn’t the initial diagnosis (as one would think, and as I did, too) it was, instead, dealing with family members and close friends about autism. Some of these people simply ignored Meghan as if she wasn’t even in the room; instead, they chose to pay attention to the more “cunning” and “normal” kids in the room. It was one thing to feel like lepers to the people of the community (like at the playgrounds) but to get shunned by people in your own family (tribe) and who are supposed to care about you and your kids? Well, it was like hearing the diagnosis over and over again—like for the very first time; it was painful.

One day I cried at a relative's home, and had to leave early because I was so overwrought with exhaustion from not only keeping Meghan safe but from breaking things and getting into trouble (it was like taking her into a china shop) and people were not only ignoring her, but no one was offering to help me distract her from getting into “delicate” things or personal things or walking into rooms that we were told were off limits: yeah right, that person doesn’t have kids! Even at three years old, if she was told not to do something, she would beat you down until she did.

So I left early and left crying. And no one walked me out or offered me help (or sympathy) or cared. My mother yelled out after me from the house: “Are you alright?” “No! No mom, I’m not alright” was my silent remark. (But at least she cared to ask!)

I kind of felt like they were all telling me: “well you made your bed, now lie in it!” As if I had done something wrong? Having an autistic child was my wrongdoing, I guess?

The only explanation I can give for this “treatment” was that they didn’t know what to say, how to react, or what do for me—dumbfounded, perhaps (or just dumb), so the best they could do—was ignore me. That’s the best that I can come up with to explain it: the family that keeps their blinders on. What really gets me, though, is that they cared enough about the other young kids in the room to keep them busy and occupied and offered to help them and their mommies while they ate their food from their laps. I didn’t get help. I didn’t get food. And if I did, I didn’t enjoy it.

Like I said, the hardest part wasn’t the initial diagnosis, it was the treatment after…

Can anyone relate to either side?


Stephanie Edens said...

hey holly!

from the other side, i, too, have been guilty of exactly what you have spoken of. i have watched my sister exhausted trying to deal with her son and i laid back without doing anything. i think my fear was that if i acknowledged what he was doing, then it made it more real, and i feared that it would embarrass my sister by calling more attention to it. or even worse, if i [the older sister] butted in, that must mean that she didn't know what she was doing and i was trying to come to the rescue and do it right. i also was afraid that if i helped and it worked [and he stopped the behavior] that she would feel like a failure, and i didn't want to add more stress to her, as she already felt like his behavior was a result of her parenting. or worse, what if i butted in and upset him more? these were all excuses that i told myself because i didn't know what to do to help. and i knew more than anything i didn't want to hurt my sister that i loved more than anything.

but not anymore. i have seen her exhausted for too long. i step in now and help her. the first time i did it, i was scared, but soon found out that she welcomed the help. when i "butt in" now, i make very sure it is in a loving way, and not meant as a way to take charge of the situation.

sometimes when you love someone so much, it is very hard to know what to do to help. because you love them sooo much, you want it to be right, or you freeze up and do nothing.

ask for help. talk about it with them at a time when your daughter is calm. educate them, because they may be just as worried about it as you are and don't know how to talk to you about it.

thank you so much for what you are doing here.

Hollyncollins said...

Thank you so much, Stephanie!! It really helps to hear about "the other side" and from your perspective. And you are right, I and other parents of special needs kids should not be afraid to ask for help.

autismfamily said...

I try not to think back to long ago times and deal with the present. Since I am in CA and my family is in NJ did not really go through this with them, but the phone calls and presents stopped many years ago (about 7) since there was too much negativity. I stopped the communication and no plans to resume it. I had to remove that from my life.

Great insights from Stephanie. Thanks for sharing.

Holly Nappi Collins said...

Hi Bonnie,

I agree that present life is where we should live, but it is also good to help those who are just starting out with special needs so that the same mistakes are not made; and understanding of family issues...there are plenty of them.

I'm sorry that you dont talk to your family anymore .. but am sure you have good friends.

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